Thursday, September 22, 2011

I am back, sort of. One of the reasons why I haven't returned to blogging is a sense of guilt. Of the blogs I had abandoned reading, (all of them!). I felt like I couldn't go back to blogging myself, without being a participant in other blogs. But my life has pushed me to return to blogging, regardless of my reading, because things are happening quickly and I really need to keep track of this stuff, for Little Man's sake, my sanity and the journaling aspect of the whole thing.

Life was busy and good from last you heard from me. I continued to work part time, as a big chain store portrait photographer. (I can tell you now, cause I quit in May) I am not sorry I took the job, not sorry I quit. We parted on a high note, with the company being sad I was leaving, so I felt good about that. It was great while it lasted, and I learned what I needed/wanted to learn. Mostly about getting more comfortable with posing people. DONE! In fact, I am tossing around a thought of doing a posing workshop for beginning phototogs.

Moving on to summer. Summer was kind of rough, summers always are with Little Man.Still, it was MUCH better than last summer, because he has his behavior program working with him. He had a tough time, I wasn't getting enough time away from him, it was fairly stressful. Medically he was stable, so we were okay. Fast forward to August and the Boy stopped sleeping. Not the 3-5 days a month he normally does, but every single freaking night. If I had been working it would have killed me, the only survival tool I had was my nap times. Bald Man was just trying to work and bring in the dough to keep us going.

I knew better than to call his doctor, because the last time this happened, she wanted us to do a sleep study, which never got done. I have a great excuse though teacher, I promise! His last sleep study was scheduled while I was doing this. I suppose I don't have a really great excuse for the next year, except I was busy recovering, then moving etc and most of all, he was sleeping fairly well. I really, really don't deal with his stuff very well unless it gets moved to the top of the emergency list. The not sleeping thing did it. I scheduled the sleep study for July 16th.

Little Man did really, really well, or really, really bad, depending on your point of view. He sure showed them he was capable of sleeping for less than 4 hours in an entire night!

The sleep doc informed us it was hard to get information for a sleep study when they don't sleep. Am I the only one who thinks that is just bizarre? Why would we go see a sleep disorder doctor if our kid slept? The tech seemed super concerned about Little Man's breathing and kept coming in, and at one point, put a nasal cannula on him. Yeah, that was the end of the sleeping for all of us.

I went back on Thurs to discuss the results of the sleep study with the doctor. They were only able to use the pulse ox that monitors oxygen and the CO2 monitor for 20 minutes of his sleep study. It was very significant with lots of low oxygen (desats) and high carbon dioxide levels. She said it needed follow up, so we got sent home with a script for overnight oximetry.
The little machine attached to his finger/toe, and recorded the information for the sleep doc to look at.

It was an unpleasant/scary 3 days. Of course it was a HOLIDAY in Utah. I hate Pioneer Day. But that is another post.
Normal levels of oxygen that are good for you are anywhere from 100% to 92%. Anything under 92% is bad. Bad for your body, bad for your heart, bad for your brain.
This range was his good level! ACK! The top number is the oxygen, bottom number his heart rate.

This low is scary, brain damaging low scary:

Mostly he hung out in the mid 80's. Bad numbers. Never knew I could hate numbers below 92 . But I do.
So, finally on Tues, the sleep doc got the report back, and said, um, yeah, would be nice if he could do cpap, but we need to at least start him on oxygen. And along with the low oxygen levels, he is also having nightly episodes of bradycardia.His heart rate is dropping down into the low 40's. So she referred us to a cardiologist too. If you wish to insert a deep, overwhelmed sigh here, it would be appropriate.
The visit with the cardiologist ended up being non eventful, thank you very much! Little Man does not have Pulmonary Hypertension, and the ekg and echo of his heart showed his heart had not sustained any damage from his low oxygen at night.

Well welcome back...kind of.I'm so sorry Jo that your life has been so chaotic.I was hoping that things were better for you guys.

I hope they get this kid figured out so that if anything....you can all sleep. Can you imagine how much his moods are effected by his non sleep.You might just have this super nice, smart and pleasant child under all of these alarms and low numbers.